Peer-reviewed article
Consent understanding and willingness to participate in research among adolescents and young adults living with HIV.
John-Stewart G, Dyer J, Jiang W, Badia J, Agot K et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study examined how well adolescents and young adults living with HIV (aged 10-24 years) understood informed consent and whether they were willing to participate in research studies in sub-Saharan Africa. Younger participants understood consent information less well than caregivers, though there was no difference for those over 18. Youth were less willing to participate in studies involving blood tests or questions about sexual behaviour, but more interested in contributing to science and helping future people. The findings suggest that consent materials need to be adapted for younger youth, and that youth should have more say in how research is designed.
Key points
- Adolescents under 18 had lower informed consent comprehension scores than caregivers (median 15.0 vs 16.0), but adolescents over 18 performed similarly to caregivers
- Video and written consent information produced similar comprehension scores
- Youth preferred deferred-larger rewards more than caregivers preferred earlier-smaller rewards, possibly reflecting financial pressures on caregivers
- Youth were less willing to participate in studies involving blood collection, long-acting ART interventions, or sexual behaviour surveys compared to general surveys or text-messaging interventions
- Caregivers were more willing for youth to participate in studies than youth themselves were willing to participate in several scenarios
Limitations
The study was conducted in sub-Saharan Africa and may not generalise to other regions or HIV-positive youth in other settings. The study measured willingness to participate in hypothetical research scenarios rather than actual research participation behaviour.
Abstract
Background There are limited data regarding informed consent understanding and research decision-making among youth in sub-Saharan Africa. Methods Adolescents and young adults living with HIV (AYLHIV) aged 10-24 years and adult caregivers of 10-17-year-old AYLHIV were enrolled. Consent understanding was assessed using the Informed Consent Comprehension Assessment (ICCA) tool. Willingness to participate was tested in four research scenarios (HIV-specific cross-sectional, non-HIV-specific cross-sectional, HIV-specific longitudinal, and HIV-specific interventional). ICCA scores, willingness to participate, and preference for deferred-larger vs. earlier-smaller reward were compared between AYLHIV and caregivers (CG). Results Among 104 AYLHIV (median age 17), and 98 CG (median age 41), comprehension scores were lower among AYLHIV than CG (median 15.0 vs. 16.0, P = 0.027) with no difference between CG and AYLHIV >18 years old; video vs. written consent information elicited similar scores. Youth were more likely to prefer deferred-larger reward than CG. Youth were less willing to participate in studies involving blood collection, long-acting ART interventions, or sexual behavior surveys, than in general surveys or text-messaging interventions. For several scenarios CG were more willing for youth participation than youth themselves were. Contributing to science and helping future individuals were leading motivations for research participation and were similar for youth and CG. Conclusions Adaptation of informed consent for youth <18 years old may improve comprehension. Higher desirability of deferred gratification among youth than caregivers was surprising and may reflect financial needs among caregivers. Mismatched interest in youth participation between youth and caregivers suggests that youth guidance on research design could enhance participation.